Living with juvenile idiopathic arthritis: “I want new knees, but I am too young.”

27 April 2021
Maisie having a drink and her leg banaged after a knee operation.

I’m Maisie, I’m 19 and I’m living with juvenile idiopathic arthritis (JIA) and fibromyalgia.

I work part-time as a support worker with adults with learning disabilities and mental health. I love my job as I feel I can share my experiences and what helps me.

“I was two years old when my symptoms first started.”

My mum and dad noticed I had a cold virus, and they took me to A&E as I was getting worse.

I couldn’t move my wrists, elbows, fingers, knees, ankles and toes properly and I was screaming in pain.

They were told that it would go away, and we were sent home.

As my symptoms continued, they called 111 for advice, as they knew things weren’t right. They were told to take me to hospital, I had tests and the results showed I had JIA. They had to push for answers as there wasn’t as much knowledge as there is now.

“I was referred to a rheumatologist and prescribed methotrexate tablets.”

I was horrendously sick when I was on methotrexate. My mum had put them in yoghurt to get me to take them, as they were disgusting. I was given splints as I walked on my tip toes.

By the end of primary school my knees were very swollen and painful. It wasn’t so bad in my fingers, toes and elbows, I had almost grown out of it.

By secondary school, things were going downhill, and life felt much harder. There was more walking between classrooms, and I couldn’t do PE by year nine.

I had regular steroids injections to help reduce the pain. They would work for about two weeks, then the pain would come back.

In year 10 I moved to Gloucester from Devon and going to a different school was a lot to get used to. It was hard getting the support I needed, as they didn't really understand my ‘invisible illness’.

“I had to keep explaining to everyone why I was off school.”

I had to say where I’d been and why I could not walk ‘properly’. For this reason, I was bullied and even the teachers didn’t really understand.

My mum had to go in all the time and explain what was wrong. Eventually I got a scribe for my GCSEs as I struggled with writing for exams because of my wrists. That was helpful and without her I wouldn’t have got the grades I did.

“An MRI scan showed I had cartilage floating around in my knee.”

Results of an MRI scan helped to explain the pain and the locking and clicking symptoms I had.

Since then, I’ve had many keyhole operations to remove loose cartilage in both of my knees and had to have microfractures. I've had lots of surgeons look at my knees and I've been passed on many times as they don’t know what to do with me, as it's something ‘they rarely come across’.

“I want new knees, but I am too young.”

I do get upset and my Mum is strong for me when I’m having a bad day, even though I know she’s upset too.

We understand why they only do knee replacements at a certain age, but in the future, I do hope that someone of my age will get new knees that can last a lifetime.

I do have my bad days, but I try to positive most of the time, as being sad doesn’t make anything better.

“I was recently diagnosed with fibromyalgia.”

I’d been getting weird pains for a while, I used to blame the pain on my arthritis but when I explained it to my rheumatologist (who is amazing), she helped to get my fibromyalgia diagnosis.

At first, I was like, yes, they have found something, then it hit me that I have another condition to live with.

“I like to keep busy as it helps to take my mind off the pain.”

If I don’t keep myself busy, my pain feels worse and unbearable. That’s why I decided not to shield during the pandemic, as mentally it would’ve been too difficult.

I use painkillers daily and a hot water bottle helps. One of my favorite things is a hot bath, as this reduces the pain. I also use crutches and tuba grip supports when I need to.

I’ve been doing hydrotherapy and with lockdown it’s been hard not having that. Doing some movement helps, as it eases stiffness. Swimming is amazing and my Mum used to take me regularly. Although we’ve had both vaccines, with COVID-19 we still need to be very careful, if we go back to the pool.

I’m also waiting for a referral for sessions of yoga physio which will be flexibility and stretching exercises. I think I will benefit from the physical and mental aspects.

“My mum and dad do so much for me, from taking me to hospital to being by my side.”

I live with my mum and I cannot thank her enough for what she does - from helping me with personal care to just being there for me.

My partner, Keyan, has helped me so much, sometimes he’s had to help undress me, and getting me in and out of the bath, he's so caring.

And my best friend Ellie is amazing. She’s never judged me, she’s a true friend and I can talk to her about anything.

“My advice to others living with JIA would be...”

  • If you have any concerns, ask questions and push for answers from your healthcare team. You know your body better than anyone.
  • Give yourself praise. I give myself regular praise, which may seem like a small thing, but it has a big impact on my life. It’s helped me physically and mentally. For example, when I come home from work, I tell myself well done for completing work today, or you did this well today.
  • Look online. Resources like Versus Arthritis are so good. There’s support out there and I’m happy to share what’s helped me.
  • You are not alone. It’s okay to express your emotions, letting them out is better than keeping it all in.

Our services

If you or a family member under the age of 25 has arthritis, we run a Young People and Families service that provides information and support and puts on a range of events across the country.

Our service helps young people and children offers advice on how to live well with arthritis, medication and potential treatments, as well as creating a safe space to ask questions, receive information and develop support networks.

Find out more about our Young People and Families service. 

We’re here whenever you need us